Tuesday, May 24, 2005

Back to chemo

Dylan is on day 2 of a 5 day round of Irinotecan & Temozolomide, making it Dylan's 9th round of chemo. He is doing well, he just throws up during the infusion but then he is fine. He has given up eating food again but as he is still on TPN for 12 hours each night he should not loose any weight. Yesterdays weigh in was 17.6kg!!! Yahoo! The Diarrhea has not kicked in yet but I am sure in will by tomorrow. Dylan continues Lomotil, Folic Acid, Pentamidine and now Nystatin for thrush that has developed on his tongue…another lovely chemo side effect! Platelets and hemoglobin counts are good but his ANC (White blood cells & neutrophils) are on the down slide, so GCSF shots are on the cards by the weekend. The FDA meeting is today, so hopefully by tomorrow I will get some sort of an idea on what’s happening with MIBG treatments at MSKCC. Dr Kushner said he was confident that it would be resolved soon and I should hold of on putting our name down at CHOP until we see what happens here in the short term. Some encouraging words were that he feels, since Dylan had surgery, his bone disease will not increase in the near future, and that he believes we have some time to work on it. That’s so nice to hear and I too now believe that Dylan has a longer life expectancy, thanks to the skills of Dr LaQuaglia and MSKCC. If we had of stayed in Australia, his oncologist told me he had 2 – 12 months to live, but now with surgery those statistics are out the window and Dylan will be around for a lot longer. If nothing else we have bought time, more time means more treatments can be tried and more time for a cure to be found. Dr Kushner said that MIBG was just one option, and that there are still many trials that Dylan can try that are available in the United States. Neuroblastoma is so complex and what works for one, may not work for another. We just have to keep on it and find one that works for Dylan, and keep living for tomorrows.

Rebecca at the Australian Consulate is working away at renewing our visas, I have just been told there will be some cost involved – not sure how much but that’s a bummer. I think Rebecca is trying to speak with immigration to try and waive whatever costs are involved. I will also need certain documents such as letters from the hospital and proof of funds to pay for up coming treatment. We have about $75,000 left in the MSKCC account, out of the original $350,000. Unfortunately I had to buy some more GCSF which cost us $2,397.40 for 7 doses! I have had some very lovely parents call in to give us left over supplies of GCSF which is helping us out greatly, thank you to you all. While in hospital this week we have met up with fellow Neuroblastoma patients Erin & Harrison which was nice. We also met a lovely family, who has traveled from Hong Kong, for their son to have treatment at MSKCC. Their son is 7 years old with Neuroblastoma and in Hong Kong they were recommended to come to MSKCC for his surgery and treatment. We could almost have a Miss Universe competition here at Ronald McDonald House…we have Miss Norway, Miss England, Miss Ireland, Miss Italy, Miss Greece, Miss Japan, Miss Australia (yeah not!) and many others. Back home in Oz, This Friday Night, 27th May, there is a raffle at The Sands Hotel, Hall Rd, Carrum Downs, Victoria - Starting from 4.30pm in the Public Bar. Raffle will be drawn about 8.00pm and all the proceeds will go towards our living expenses. The Cricket Match in Philly USA raised a whopping $1115, a big thank you to everyone involved in that event. Dylan made a great come back in the footy tipping at the Australian Consulate. Dylan is back in first place on 45, thanks to wins by Richmond & Collingwood over the weekend. I have been getting emails from Tim that scream out how much he and Cain are missing us, it’s so tough but we all have to hang in there. It’s harder to call each other now because the time difference has changed, due to daylight savings. When Tim gets home from work at 4pm, its 2am in New York! Our phone calls are now restricted to weekends. Thank god for email technology!